Been awhile

It's been awhile since I blogged, but life has a way of throwing you curve ball's and making other issues in your life the priority. The last 6 months of 2010 my dad was pretty ill. I spent  a considerable amount of time there during the end of the year.

Then of course, I had an MS flare up in the midst of it all, then I'm still fighting my chronic back pain and jumping through way to many hoops to get it fixed.


I hope you all have spent the last six months in better physical health than I have. I underwent a round of IV steroids as well as steroid eye drops for another round of otic neuritis. Just when I though I had the chair beat, back into I was. (I'm back up to using the walker, but it's iffy most days).

I rarely have a day that I don't have the consious thoughts of MS running through my head. I remember when the symptoms of MS, for me, were so mild that after my daily shot, MS was an after thought. I hope I see those days again!

Gilenya outrage...

As with other MS patients I have been eagerly awaiting the availability of Gilenya. I'm sure you've heard of the drug. The new ORAL MS medication approved by the FDA very recently and available this week in the US by prescription. I was very excited, as was my entire family to hear that the FDA finally approved Gilenya. In fact, my sister heard first and send me a text message about 40 minutes after the drug was approved. I was so excited that I picked up the phone and made an appointment with my Neurologist for October 20th to talk to him about it. I had visions of no more needles and Immuran dancing through my head.  


SCREECH went the brakes on that vision as soon as I read the Bloomberg report on the WHOLESALE price Novartis intends to charge for the drug. $4000.00 a month! Thats right..4 THOUSAND dollars PER MONTH. WHAT?!  Hey...I understand the concept of profit and how expensive research is as well as the next guy does, but honestly. $4000.00 per month for a ONCE A DAY pill?!?!?  Thats 133.33 PER PILL PER DAY..and that's the WHOLESALE cost. 


All I can say is SHAME ON YOU Novartis. You have successfully out priced your medication from the very people that need it. Do you REALLY think my HMO is going to authorize Gilenya when it can pay for both my injection AND Immuran for less than $1500.00 per month?? What about the folks that don't have insurance?? Like they can come up with $4000.00 a month WHOLESALE. SHAME ON YOU!!!

Traveling......

I’m actually blogging as we get to cruising altitude on my way to visit my family. Interesting thing this modern technology. Means we can run, but we can’t hide. 

I’m actually feeling pretty good today. Tired from getting up at 3 a.m., but other than that no extreme fatigue today. Of course the travel isn’t over yet. However, I was lucky that my connecting flights weren’t far apart so walking wasn’t too difficult. Letting the airlines know in advance I’m deaf helps a lot as well.

I have to admit, I’m always apprehensive when I travel alone. As if being deaf wasn’t enough, throw MS in an one never knows what to expect on any give day, let alone a travel day. I never know how my body is going to react to the stress. Even if it’s GOOD stress, it’s still stress.

I made an appointment with my Neurologist when I get back to talk to him about the new oral MS drug. I’m already on Imuran so I’m familiar with the side effects of taking an immunosuppressent, I’m convinced it was going on the Imuran that beat my MS back into submission earlier this year.  It’s my understanding that with the new oral med I wouldn’t have to take injections anymore. Wouldn’t that be awesome! A pill a day to keep the MS symptoms away.  What a great stride forward for us MSers. Makes me hopeful that we WILL see a cure someday.

FIRE!!!

O.K. I know were not supposed to yell fire in a crowded room.....but my legs are on FIRE!! One of the worst MS symptoms I have is neuropathy. It makes my legs and often arms, feel like they are on fire. My skin become so sensitive that even the air blowing for the overhead fan hurts.  Nothing seem to help anymore. I usually am pretty successful at ignoring it, but it woke me up several times last night. My feeble attempts at ignoring it weren't successful to say the least.

I am still determined to make today a GOOD day in spite of the pain. Mind over matter, mind over matter is my mantra of the day.

Finally Fall

About time I started blogging again. TIme has simply gotten away from me. Lately it seems like it's everything I can do to just keep up with life's frustrations. Social Security denied me yet again for benefits. Apparently I still have a brain so chronic pain and MS are not reasons to be disabled. Well then what the hell is? Oh and don't forget I'm deaf as well.

As I can no longer work a job on my feet. Heck, I'm lucky I can walk, looks like I have to figure out a way to start a second career. So, back to school I go. Which is going to be very challenging considering I can't hear, nor do I sign. Way to set up for success don't you think?

My MS has been a sleeping giant the past few months. Tossing and turning to let me know it's still there and can awaken at any time. My biggest problem has been the pain in my legs. That "FIRE" pain that screams out with every touch against my skin. I try to ignore it as much as possible. Medications don't seem to work anymore and I haven't found a way to find relief using any natural remedy.

I' still taking the Imuran which, I am convinced, is really what put my MS into sleep mode. I'm walking  with a cane. While I have to be very careful, I'm WALKING! No more chair which is an amazing blessing that this time last year I didn't think I'd be able to say again.

Why bother

My heart just isn't in blogging right now. Hasn't been all summer. I'm hoping it comes back. I miss it...but the well of topics has run dry.